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Author
Topic: hiv+ for 30 years or more? (Read 21098 times)

Hi everyone!I have been on this site off and on for a few years and was wondering if anyone has been positive for 30 years or more. (It will be be 30 years for me in 2 months)Sorry for the "poll" but I recently applied for disabilty and am thinking I am a pretty rare breed. (Not that it makes any difference, but I have yet to meet anyone in my boat in person or on line.)Hope to hear from you LTS!!!Thanks.(SSDI is making me take a dementia test. I always try hard on tests but I KNOW I am disabled and hope I fail this one. Hard to believe they can deny me but...)

Actually there are some members here who had AIDS defining numbers upon taking an HIV test when it was first available in 1985, so one may infer that they have been infected for at least 30 years and possibly longer.

Actually there are some members here who had AIDS defining numbers upon taking an HIV test when it was first available in 1985, so one may infer that they have been infected for at least 30 years and possibly longer.

Ms. P. you are correct. My initial CD4 was around 75 according to my medical records.

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"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Thanks Miss Philicia. I guess we will never really know how many of us are 30+ year survivors seeing as the test wasn't available til 1985.It just that I never hear people speak with confidence that they have been poz for so long.I remember the disease hitting me like a club over my head for the first several months. Total fatigue and fevers. And, of coarse thinking that the grim reaper was just around the corner.The life saving meds became available just in time as my viral load suddenly went through the roof.Since then, everthing has been just peaches and cream. ha.So, should I have concern about being turned down for ssdi?My stats look good.Viral load undetectable, t-cells have remained in the 600's, still always feel like crap and can no longer focus. I have not had the physical troubles that many of you have had to face. (yet??)Sorry about rambling on. (I am originally from Minnesota and part of the Rose Niland in me seems to popping up with more frequency lately.)

I had to hire a disability lawyer after my initial application for SSDI for dementia was rejected. I was told at the time this was common and I was referred to a disability firm. The lawyer takes no money up front but they do get a % (I can't remember how much) of your first disability check if they win. I can't remember what happens if you lose ( their goes the memory again). Bottom line was we won. Good luck to you.

thanks mishma.i started the process with a lawyer. wanted them to know i wasn't kidding from the start.i believe by law that they can't charge more than 6000.00 and am pretty sure they don't get anything if i lose. a chance they take in representing me.glad you made it through the process.was the appeal difficult???what more info did you need to prove your case??any help from anyone with this question would be helpful.

thanks mishma.i started the process with a lawyer. wanted them to know i wasn't kidding from the start.i believe by law that they can't charge more than 6000.00 and am pretty sure they don't get anything if i lose. a chance they take in representing me.glad you made it through the process.was the appeal difficult???what more info did you need to prove your case??any help from anyone with this question would be helpful.

Mitch, JR Gabbard is the moderator of the Benefits Program Forum here and is also an attorney. You might want to post your question over there and see if he can offer some insight once he sees your thread.

I'm sure you do know that each situation will vary depending on the individual but at least some general information, which I'm sure JR can provide, will prove to be somewhat helpful.

Seroconverted: Early 80sTested & confirmed what I already knew: early 90s

Current regimen: Atripla. Last regimen: Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky )Past regimensFun stuff (in the past): HAV/HBV, crypto, shingles, AIDS, PCP

There are two possible times that I think would be prime candidates for my infection. One was the summer of 1978. Went into the hospital very sick. Stayed for 13 days. They did every test under the sun and then some. Never could figure out what was wrong. Eventually got better and was sent home. That would put me at 34 years.

The other time was probably spring 1985. Caught what seemed to be the flu but wasn't really flu season...not that you can't catch the flu anytime. That would put me at 27 years.

Did the test about six months after it became available and then progressed to an AIDS diagnosis (thrush) before my second year was done. Then nothing, t-cells stayed at 700, viral load remained undetectable...until I started on Atripla.

However, regardless of the number of years, I was a slow progressor. Drugs started about 3 years ago. Aside from that I'm relatively healthy. Work, go to the gym, lead a "normal" life as it were (except for the pills and shots everyday). So...other than possibly matching you for number of years my AIDS trajectory has been markedly different from what you've mentioned and what most on this site experienced.

Hope there are more 30+ out there then we might think. Everyone in my age group couldn't have died...could they?

I'm at 27 years and 3 months. The halfway mark was hard for me. Now I feel I've entered my "golden years" at 52. Filled 14 prescriptions this month. Having high-grade precancerous tissue removed from the rectum for the second time next week. I believe it was Janis Joplin who sang, "Take it! Take another little piece of my asshole baby!"

Just celebrated my 30th anniversary in June!! I converted in June 1982, and I know this for a couple of reasons. First, was from a strong suspicion, and second was from laboratory confirmation. That June I had what would turn out to be "typical" seroconversion symptoms (fever, swollen lymph nodes, muscle aches, headache, flu-like symptoms). But to put this in context, first, some history.

When my first partner gave me gonorrhea (again) in 1978 I went to the San Francisco STD clinic to be treated and was asked to enroll in a Hepatitis B study. From that study I got into several other studies where blood was drawn serially over several years. Somehow I got rolled to the original COHORT study group that came from the SF STD clinic. I was in the Leon McKusick AIDS Behavioral Research Project ten years, and I think it was in 1986 that I got a letter from that group saying that my blood samples from the various studies had been thawed and were tested for HIV. They told me that my results were available to me, BUT, they cautioned “you may want to seriously consider whether or not you would like to have this information. Since there is no treatment available at this time you may find the stress of knowing more harmful than helpful.” I may not have that quote exactly right, but I remember the tone very clearly! Since I was an RN working in the front lines of AIDS care in San Francisco at the time my immediate reaction was that I did NOT want to know!! I had assumed for a long time that I was infected because of the many STDs my first partner had shared with me from 1977 to 1984 because he was incredibly promiscuous (ain’t love grand!). So, I declined their offer until 1988 when I wrote them and asked for my results. True to my suspicions, I was negative in the spring of 1982, and positive in the fall of 1982!

I have been incredibly fortunate. Many physicians who have cared for me over the years have postulated that one reason I am still alive today is because I got the “original” strain of HIV before it got more powerful and pesky! I know there have to be other factors, not the least of which is divine in nature, but because of my work in the medical field I had also done a lot to take care of myself in general (gym, diet, vitamins, no drugs, no drinking, etc.) and always had protected sex after we found out what was going on. There was no such thing as “safer sex” back then, and I don’t blame my first partner because as it turns out, what we didn’t know can and did hurt us both! He is still alive and well too, and we are friends over 30 years later. I did not start on any medication until 1995, and I have always thanked God that there were/are even medications to take, since I saw so many of my patients and friends die before anything was available. I still do my best every day to live my life as Positively Pozitive as I can. I have a wonderful man in my life who loves me no matter what, and that is the very best medicine I could wish for, and he gives it to me for free!

jdb,sounds alot like me.i agree we were very lucky to have made it until the better meds became available no matter what the reason.while i can now feel the toll the virus and meds have taken on my body, i still try my best to stay positive.i also am fortunate to have a lover (of 18 years) who keeps me smileing and laughing.wether it's a partner or close friends, having them be there through the journey can make life a banquet.(sorry, just saw "Mame")happy "anniversary"!

Infected sometime between '81 - '83. Always used protection '84 - '86 and celibate (fodder for another topic) since then !!! So I'm somewhere in the 30 year range.

May be a bit late in replying to the SSDI but the "magic" wording is.....cannot gain sustainful employment.....They could care less if you walk into the office with one eye hanging out, break into convulsions, etc. Don't apply stating your symptoms. State why your symptoms won't allow you to "sustain gainful employment." It's a long process so make yourself comfortable.

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Due to current economic conditions, the light at the end of the tunnel has been temporarily turned off!

I just want to say that I have a profound amount of respect for you guys! Sharing our stories here is so helpful. 30+ years is an achievement. It's your fight, our fight, that eventually will give this disease a new face, and later evaporate into the books of human history.

Euro, your remarks are appreciated. However, this forum is specifically limited as stated in the opening thread, to those who were diagnosed prior to 1996. You are not in the category so please respect the rule and don't post in this forum again.

In June 2012 it will be 29 years for me , and will turn 62 Yo. All because we where there as Guinea pig to try all these new treatment available , and get to live and see what long term used of antiviral drug can do a someone body. it work for some of us ,fortunately I am one of them .But you do not get to be a long term survivor without side effect and scaring incidents. Lypoatrophy and countless bout of lung problem from bronchitis to pneumonia, , osteoporosis , 3 times cancers and much more trust me . Overall doing excellent and stable for now and undetectable , You always have to be pro active about any issue coming at you .I had to stop working 10 years ago , since I am living with no stress as possible .I exercising regularly , eating well, well connected with friends ,I have an positive outlook on life and I hope to go on for a while .PS. Who knew 29 years ago ,after they tell you you are HIV , you go home with 2 to 5 years to live ! They are waiting for us to write the long term survival story .I am not religious , but I make a point to appreciated everyday .

Congratulations. There should be a lapel pin or membership card that comes with this event.

Now you have to start working on the next 30. I can't wait to be a senior citizen with HIV.

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Hope you don't mind me taking over this thread just a moment but I have a question along these lines that I don't want to start a new thread for. Kinda relates thought.

Perhaps one of the mods will chime in.

I've been thinking back to the first days of beginning of this epidemic. I always assumed I got infected around 86 because I had a child in 84 and neither him or him mother tested positive. Is it possible to be + and impregnate someone and neither of them become positive?

It all gets me thinking to the very first days and how we all told it was large cities who had to worry. I wonder how many small regions had the high number of early AIDS cases that were brushed under the carpet.

A guy a couple of years older than me immediately went to San Fran as soon as he graduated. I graduated about the time he returned and we were pretty much a slutty group in privacy. Bisexuality was common. By 1985, they were dying off already.

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

I've been thinking back to the first days of beginning of this epidemic. I always assumed I got infected around 86 because I had a child in 84 and neither him or him mother tested positive. Is it possible to be + and impregnate someone and neither of them become positive?

Yes, it is possible. We've had several women here over the years who had hiv positive male partners but yet remained hiv negative. It's possible that your babymama is one of them, but there's no way you'll ever be able to know for sure.

The baby would have no way of becoming poz unless his mother was already poz. The virus does not directly infect the egg when it's fertilized; when babies are born positive, its because they were infected during pregnancy or birth.

Oh, and by the way, being born to a positive woman - even if she's not on meds - is not a guarantee that the baby will end up poz. Some lucky ones are born negative even when the mother is not being treated, although it's far better for the mother to be on meds, as it lowers the incidence of the baby being born poz to somewhere less than 2%.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I thought I specifically told you not to keep secrets from me. This is like 100 times worse than wearing sweatpants amirite?

I'm surprised that wasn't already in your data bank. I mentioned that I got a girl pregnant right around the time we graduated from highschool and even did the honorable thing by marrying her. We did the quicky divorce thing almost immediately after our son was born. We really didn't live as a married couple, it was all for show as her parents were insistent upon it.

Ann, I OH SO wish I was a grandpa. I've made references indicating that it's time for my son to at least be irresponsible if he's not going to get married and start a family. But not a gpa yet. I guess that's my continued punishment.

Back to the original thread now.

I just wonder about the actual numbers attributed to other illnesses rather than AIDS. To have lost so many friends by the mid 80's would indicate that we had the virus in our small community long before it became well known. Around the same time, we had a high number of suicides. A lot of these people were not the sort you would have expected it from. Most were damn good looking, from well to do families and had very bright futures. I know I considered it myself out of fear of having my must horrid secret revealed and destroying my family.

Even when I read through the obits I've kept of all my friends, only ONE indicated he died of AIDS. And that was only because memorial donations could be sent to our newly formed AIDS Task Force. All the others died of all sorts of cancers and died after a "brief" illness.

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Surely that's no worse than "My deviant, sodomite Daddy has AIDS" now is it?

A while ago, that might have pissed me off.....now I see the humor in it.

But seriously, conservative communities didn't have access to information if they were only provided news from conservative sources. Perhaps there was more on TV, but I don't seem to recall it being a focus in our rural area until it was too late.

Kinda like today's meningitis outbreak in NYC, doesn't appear to be affecting faggots in our parts....YET.

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Ann, I OH SO wish I was a grandpa. I've made references indicating that it's time for my son to at least be irresponsible if he's not going to get married and start a family. But not a gpa yet. I guess that's my continued punishment.

Oops Wolfie, I was obviously thingking of someone else. Sorry! All you gayboys look alike.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Oops Wolfie, I was obviously thingking of someone else. Sorry! All you gayboys look alike.

I'll forgive you since you called me a gayboy instead of an old queer.

Willy and Mike are both grandpas, not sure of any others. I certainly would have expected to be one by now also, but I guess my son learned responsible behavior some where along the way. I'm sure he was aware what Bill and I paid out each month in child support for our 4 children so that might have scared him....lol

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

Hi All...in March 2013 [13th] I will have been diagnosed for 30 years as well.... Blood taken in ‘83 for the LAMS cohort was confirmed 'highly reactive' when the first HIV antibody tests came out, however my Dr in Las Vegas at the time said I had GRIDS based on my CD4 count and over lack of health [ thrush, wasting, loss of more than 10% mass, swollen lymph glands, myositis,etc].... this was later confirmed via LAMS ’85 from blood samples they had frozen and I went on to be part of Jay Levy's long termer study, same with David Ho, Oren Cohen and the NIH. Was on the original AZT trial [ U of M Fischel et al], but dropped off due to side effects and only went back on ARV's back in 2005...and thriving....Great reading all your stories and Nice to know that although I am now living in Africa, I am connected to people like me.

Hi Mitch777, Mike here. I've been on meds for 25years plus. I was informed by Hospital personnel, of tainted Blood supply donations, way back in 1978, but didn't start treatment 'til 1988, after a surgeon stuck himself during my knee replacement. I waited 10 years to start, but figured the odds were against me that I wasn't Poz, while living those 10 years, as if i was prob. positive. I started 'cuz the drugs got more reliable, less side effects. So now, I'm in my 60's and walking & talking!

I am also ex-military. I did not test poz until 1993. I got out of the military due to a NIS agent who started an investigation on the ship I was on. I did get an honorable discharge. I would like to talk with you more about your experiences and how your life and you are today. You can e-mail me at the address attached to my profile.Thanks, Jim

@ PozJimC and em welcome, I'm also ex-military tested POZ+ in 87, but was already out of the service after 2 tours of duty with an EAOS in 85

I have 2 honorable discharges, but in todays world they don't mean much, however was able to use them 25 yrs. ago to land a law enforcement job for 5 yrs. and then worked for an Armored car company and retired out with a pension

nice to meet ya both, there aren't many of us around, and YES, I very much alive and doing well

HUGS

DEN

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Congrats on the long haul ... unfortunately due to the economy and thanks to better meds we are out of toasters . You still have bragging rights and a pass to be grumpy with the folks in just tested poz though , that's something at least .